Saturday, April 20, 2013

This New Life :: To Jump or Not to Jump?

Four years ago, my life-long migraines took a bad turn. The good news -- I've been in "remission", if you can call it that, only experiencing bad headaches when the weather changes.

Two years later, the degenerative disk disease I had in my back and neck since I was 22 became a serious issue and I started getting epidural shots for pain. The good news -- the doctor has nailed down which nerves are being compromised and I'll be having them cauterized soon.

Around November of last year, though, I started noticing my joints and muscles were aching. Then burning. Then swelling. I would run a low-grade fever off and on for no good reason. I continued to feel completely exhausted ... that bone-crushing tiredness that robs you of the ability to do much of anything. I had days when I couldn't drive Zack to school, even though it was a five minute trip. I found myself spending 90% of my time in bed. I started losing hair. My hands hurt too much to hold jewelry tools and the pain would wake me up almost every single night.

Pain medications didn't work.

I've written rather freely about my lifelong fight with depression, but with chronic pain comes a special brand of depression, and I found myself putting all my hopes into first this doctor, and then that one, and then yet another.

Recently, after a particularly devastating doctor appointment, I couldn't shake the despair. I can't do this anymore, I thought. As I drove back to my home over the Bay Bridge, a bridge that normally gives me chills, I had a sudden, terrifying clarity of thought.

"You know ... you could jump."

The thought was so searing, so completely overpowering, that I actually slowed the car down.

I've tried to come up with words to describe exactly what I was thinking at that moment, but I've had weeks and weeks to think about it and I still can't describe how terrifying it was to actually consider leaping from 200 feet -- something like twenty-five stories. All I could think of at the time was how amazingly peaceful it would be to swan dive and finally, forever, be pain-free.

Luckily, I came to my senses. Even though I've felt like less of a mother for being constantly tethered to a bed, I couldn't possibly leave my precious little boy. But those few moments scared me. I drove the remaining thirty minutes home and immediately contacted a friend who has been a lifeline, a pain pal, and a serious source of common sense while still remaining empathetic and kind. While I sat in the school parking lot waiting to pick up my son, this friend kept my head above the proverbial water. I got home to my husband, who held me while I cried, and he stayed home the next day while we continued our search for answers with another doctor.

In case you're wondering, I'm under good professional care, and while I still have dark days, I no longer have days where I question living. I'm not done here on Earth yet. I don't know what my ultimate purpose is, but my purpose right now is to be a mother, and I have to be present to do that. Some may think it was extraordinarily selfish or insane or even ridiculous to consider suicide at all. To those I say, be very thankful you've never visited that dark place, because it's not always easy to back away from the edge. Some may wonder why I risk people's opinion of me by writing about something so enormously personal and polarizing, but I don't care. If my story helps just one person step back from that edge as well, it's worth it.

View from my backyard. All storms do pass ... or at least turn to gentle rain.

With the help of my husband and a few friends, I soldiered on, dutifully marking down one, two, three, a dozen doctor appointments on my calendar, wishing for a name for what was wrong with me, because I was starting to think maybe it was all in my head after all. How could I hurt so badly but no one could find anything wrong? How could I look fine, but feel so miserable?

Finally, at long last, I have an answer. I've had to spend some time wrapping my brain around it before writing about it because it can change my entire life.

There is indeed a certain freedom of spirit in knowing the name of your fear because knowing the name means I can get treated. In my case, my fear has two names -- lupus and rheumatoid arthritis.

Lupus is a chronic autoimmune disease that affects skin, blood, joints, and/or kidneys, causing inflammation and pain. It's not contagious (so please hug me when you see me!), and while there's no cure, there are treatments. Lots of people have it, and during my long search for "what's wrong with me?", lupus was one of the things I wondered about. So I was prepared to hear that.

What I wasn't prepared for, though, was the additional diagnosis of rheumatoid arthritis. This has been harder for me to make peace with.

Rheumatoid arthritis (RA) is also a chronic autoimmune disease with no known cure but treatments available. It causes pain, stiffness, swelling, and loss of function in the joints. It is really a rotten thing to have happen to your body, but for me, it's losing function in my hands that has me reeling. While we've apparently caught it early, I have to understand that I could lose the ability to do things like beading, playing piano, typing, handling a kayak paddle ... the mind boggles.

At first I was angry. Then sad. Then angry again.

Now I'm ready to fight it.

My way of dealing with bad news is to consider all the worst case scenarios first. This may sound defeatist and all sorts of wrong, but if I'm prepared, if I know what the worst can be, I can process it, then shelve it and move forward. If I know what the worst can be, then I'm happy and pleased when things turn out for the better. And if they DO happen to go wrong, I'm not caught unaware and can deal with things much better.

This could actually all be a good thing for me. People talk all the time about living each day as if it were your last, but rarely do. However, when you're faced with the very real news that your ability to do the things you love is going to be challenged, it suddenly takes on an entirely new meaning. I've made a list of things I MUST do, things I WANT to do, and things that can wait because they just aren't that important any more. I was going to start teaching Zack piano this summer -- must do. I want to learn to juggle and play the guitar -- better start. I want to, I want to, I must....

I WILL.

I've already started spitting in the eye of the bad news and creating a new life. Yesterday, my friend called me up. Our kids were out of school for the day, so why not try out that new indoor trampoline park we'd been talking about all year?

When I paid for our entrance to the park, the cashier asked if I was going to jump, too. It took me no time at all to decide.

"Yes. Yes, I am."

I'm paying for it today with more pain than usual, but I don't care. I was a cool mom, I giggled, I enjoyed my life for that hour in the park, bouncing and watching my son laugh and run with friends. The irony didn't escape me that this, THIS was an entirely different type of jumping. This time, the decision to jump was a good one, a healthy one, and a proud one.

One day I may have to sit on the sidelines, but not today.

Not. Today.

Tuesday I go back to the doctor to start a treatment plan. I have no idea what life is going to be like now, but I'm ready. It's not always going to be easy, but I'm ready.

Oh Lori I just want to give you one big squishy hug. My cousin has Lupus and she lives a relatively normal life. As for the RA.. I have not really paid attention to what it is, what it affects or anything else. I do however have a list like the one you made. I made it after I found out about my cancer. And though I am in remission, I still try to get everything on that list done :) Sending you thoughts and prayers..

You can do this, truly you can. It will get better. Look into alternative meds and therapies. I'd have had to give up riding years ago if it wasn't for a good alternative meds doc. Email me if you need anything, chronic pain is so hard but once you have a answer it does get better. Big soft hugs to you.

((((Lori)))) All we all can do is keep on keeping on.... my stepmom had lupus and a coworker has RA and I have Fibromyalgia- which both of those had to be ruled out along with a long laundry list of other things to get the fibro diagnosis. I can sort of know what you are going through. I was in a bad accident in December and just getting back to work and realizing that I am never going to fully recover... there have been dark days, which I have managed to push to dark moments of days...You will make it through with your positive attitude. Thanks for giving me a wake up call to pick mine back out of the dumps. There is always someone worse off somewhere....

Ahh, Lori...I'm finding it hard to find the words that I want to say...Your post is dark but full of light, painful but hints of joy. There is hope in naming something; now you have a plan. My opinion of you has only been solidified by this story you have shared...that you are one of the most inspirational and amazing people I have never met! :-) Praying for your journey.

I am so proud of you! Thank you so much for sharing. Sometimes that is really the first step. Once you know what it is, once you get it out there, once you take that leap (maybe that isn't the right word...) of faith. Once you have others wrapping their arms around you, holding you up if you need. That is when you can maybe not heal... but to live. I have had degenerative arthritis since I was young. I had kidney problems since I was born and it has taken a toll on all my joints, bones, every part of my body. I hurt sometimes so much that I don't want to move. It hurts not to move. I try to keep up with my son but sometimes I can't and the real pain sets in, that thought that I am not what I need to be. I understand you slowing down on the bridge. I am so glad you didn't stop. It takes a lot of courage to think of someone else when you are in such pain and so depressed. I want you to know you give us all hope and encouragement. Thank youThank you for being you. Thank you for being that chipper, fun, talented you.

You've been searching for so long, I'm glad you've gotten a diagnosis. It's certainly not anything one could consider good news but it's some news and there are treatments. I send you hugs and good wishes and I hope that you find relief in the new therapy. Wish I could give you a hug in person.

I too was diagnosed with RA this year. For me it is mostly affecting my knees... which means affecting my ability to walk. Having my body not do what I want it to is one of tje hardest and most disheartening things I have ever faced. Thank you for letting me know I am not alone.

It must be such a relief to have a name for what has been making you so sick! Even having to accept that it might get worse, you finally know what "it" is.

I have never felt the kind of pain you describe, but I know all too well that other dark place that calls some of us to consider it as an answer to what feels like endless trouble. I have to remember that suicide is a permanent solution to a temporary problem.

I really admire your openness and bravery in letting us know how hard this has been. I think Zach will learn resilience and compassion from you as you find your way through this health maze.

Thank you for your honesty. I hope you'll find many new ways to find relief and maybe even support from others who are in the same boat. Wishing you all the best. xoxo

You now have a name for it, you can talk to it directly, tell it you won't let it win, and with all that is you will fight it every single second, My grandmother used to say those things to my mom as she was fighting cancer and I always saw her fight....I hope to have such strength when and if my time comes for something like that. Keep your head above water, we are all here for you, and show your guys how to win any battle !!! love and strength

Be strong with the love and strength around you, show your guys how to fight these problems which you now have names for, names you can fight, names you can curse, a name you can cross off your list one day as an enemy with right treatment. We have your back if you need some support...hugs and wishes for relief, Rose

Lori,You are an inspiration to your Husband, Son, and to everyone out there that has been in your shoes in one way or another... I to have been battling with depression for many years, at first I was ashamed because I was raised you don't talk about those kinds of things and you just get over it!!! I talk about my depression much better now and the affects it had and has on me. Courage, determination, Love of family and friends get me through the tough times as it will for you. I love you messages you post and don't ever stop. I am so happy that you have found an answer to the question that has been haunting you. Sending lots of HugsDeb

Lori, I love you. The monster now has names, and while it cannot be slain, it can - and will - be fought. You can do it. I know you can <3

It's easy for someone who has never felt depression to think those dark corners of your mind are easily overcome. They're not. The only reason I never tried to kill myself was because my mother monitored me endlessly. I got my cat at age 14 as more or less as a therapy cat because I could not trust humans at all after being mocked and hated for so long. I have a scar on my right wrist from the one time I actually could not repress my demons completely and cut.

I do not understand your pain, because I have never felt it... But I understand the dark corners. The voices that lurks in there. 'It will never get better, you could die right now and no one would miss you, no one would care'.

I am nowhere near as bad as I used to be, but when things reach their worst, those voices always come back. But now, now that my monster has a name, I can fight it.

And you can fight it, too. And you will. <3

You are not alone. We might not be at your side, and we may never touch, but I am here, along with the countless others whose lives you have touched in one way or another.

Lori you have so much courage, thank-you for sharing your story. None of us are perfect but we can fight the imperfections and be ourselves. sounds like you've got a lot of loving friends and family around you to keep you going when times are tough - don't forget to it's not a sign of weakness to lean on them when you need to be supported. A big hug from me tooS

Sorry you have to deal with this, really I am, I wouldn't wish it on anyone. But I'm glad you finally have a path, stay on it, never stop moving...literally...best advice I ever got. From what I understand, the best thing for us is our hobbies, not just for the peace of mind, but the movement keeps the joints fluid...my biggest struggle is remembering to get up and move the rest of me when I'm in the "zone" :\. Did you know that runners with RA usually don't have knee damage...food for thought, that was the clincher for me. You've inspired a lot of people, myself included, these challenges are so fun and keeps us engaged with people outside out own little world, and it makes the pain a little easier to bear. So, thank you, Lori. And thank you for your honesty.

I'm thankful you finally got a diagnosis - or diagnoses. I usually find that uncertainty makes things worse. Now you and your doctors know exactly what you're facing. I'm hopeful your constant pain will be managed and those dark days will get fewer in number. Love & Hugs.

It may sound odd, but Lori, I'm so happy for you! Autoimmune disorders seem to run in our family, my parents, sister, son, and other relatives have all been diagnosed with one or several. I've been sick and tired and in pain for much of my life, getting worse each year, yet no diagnosis that pulls those symptoms together and gives them a name, a cause. It's maddening. It's "jump-worthy" at times. I'm a person that does pretty well when I just have a name for whatever I'm fighting. I can then better understand, learn, and cope. I would so like a name. It sounds like you feel somewhat the same. So while the diagnosis stinks big-time, congrats on finding a name for what has been ailing you, and my heart goes with you in your fight. You sound relieved, more peaceful, and happy already! Best wishes and thanks for sharing with us all, Sharyl

Lori, I know exactly what your going through. I was diagnosed in 1990 after years of trying to find out what was wrong after several drS said it was all in my head. I was on high doses of prednisone gained 100 lbs and sometimes it was so unbearable I thought I would rather die. Every day and sometimes more than once I said the saying which will become your inner self. This too shall pass. Find yourself a good rheumatologist and you will manage it. You will be depressed but it sounds like you have a great support system. There is also many support groups that really help. Type a people have a hard time because we don't want to accept help but we have to. One natural thing my dr recommended was gelatin tablets which you can get at Walmart. They really helped my joint pain. I know you will make it now because you are already on the other side. Thank you for your post it was painful but inspiring. Take care...

I haven't read all the comments yet but I am sure you have read this before. I have severe Rheumotoid Arthritis and have had it for more than 10 years . . . and I still bead :) I am on a lot of medication but I have made peace with that - unfortunately it is not always enough to manage the discomfort but I am so used to it now that I am able to just block it off in my mind and carry on. Some days are definitely better than others but you get through it. You just have to - there is only one way and that is forward :)

Well written post Lori, I am so glad you have a name for what you have been experiencing, it's not your imagination. Like you said that means you know what you are dealing with and can treat it. Early treatment with these diseases can prevent permanent joint damage, so I would not be putting away your jewelry tools just yet. These are both autoimmune diseases so you may find that the treatment for one may help the other. I agree find an excellent rheumatologist that you have a good rapport with, how wonderful it will be to have a doctor know you and be able to design a plan specifically for your needs. Remember to look at your individual situation and not compare yourself to worst case scenarios of these diseases. It's interesting you should mention taking up the guitar my friend who has rheumatoid arthritis for years started playing the piano to improve the flexibility and manage the pain in her hands. So happy that you have some answers.

What could I say that hasn't been said by others above me? I am so grateful to have met you, and that you are so generous in all ways. I believe that you will reach that one person who also needs to step back from the edge with your post... and I am so glad you were able to, yourself. All of my best wishes for your struggle, and sending you much love and light.

I'm glad you now have a diagnosis to work with. At least you know now "it's not all in my head". You have something to fight for and against, a cause. Maybe we should all band together like Shelly graham turner and start making jewelry to raise money for the lupus/ r.a. Fight. Just a thought. I too have suffered from depression, that's a hard fight in itself but hopefully one that can be managed with meds and help. How is your family coping and Zack. He will grow up to be a very understanding man. My second child was born with multiple heart defects and I went thru many scary times raising him... He is 24 now. My daughter is now a child occupational therapist and helps children with problems like her brother.... So maybe zack will grow up and be a doctor?

The strength you have is utterly stunning! I am sorry that you are going through all of this, but thank you for sharing. My cousin has RA and is on strong meds that HELP - she has had it since her early 20's and is in her late 50's now. There is help. Thank you. Sending you hugs, good thoughts and love.

Lori. PLEASE check outr Dr Joel Fuhrman's book, IMMUNITY SOLUTIONS. He is doing great work with people with autoimmune diseases like lupus and RA. I have been following his recommendations for a few months now for other reasons and feel great you have nothing to lose but the pain.

Thanks for sharing your journey, Lori. Even the scary parts. Depression can't be minimized, anymore than any other disease.

It's terrifying to lose functions that you rely on. (I've developed an essential tremor in my hands that makes beading very interesting.) Focusing on the journey - the Musts that are necessary for truly living - what a great inspiration!

From one chronic pain/disease sufferer to another, this is a relational I came to several years ago. I said, " my pain has had all the time I am willing to give it. It is time to push it to the back and live. I will no longer allow it to take anything else from me. "So live, love and living goes on.Penny

Thank God for a diagnosis. It's so much better to be fighting something when you know what it is. And thank God for friends and the inner strength that kept you from jumping. I feel pretty confident that with treatment and your own spirit, your life is going to get better. I know you have a strong support system at home, but if you ever need anything from a distance, just ask :-)

I love your attitude, Lori. There aren't many people who are able to share what you have shared, but I'm glad you are able to do so because your attitude is so inspiring. It is a mystery to me why some people have to suffer with illnesses such as yours while others do not. I do not (at least for now), but I believe that you must live for today because you don't know what tomorrow brings. That includes doing what you want to do as well as not doing what you don't want to do. I'm so glad that you have a diagnosis because that makes treatment much more successful.

Lupus....wow. I am happy that you finally have an answer as to what has been happening, and can now start to receive some treatment! Arthritis is not the end of the world - it runs in my family, and although my mother was diagnosed with it a few years ago, she is still able to do all the things she wants! (her secret is evening primrose oil tablets apparently!) So take heart Lori, it'll be ok :)

I'm so glad the pain all that comes with finally has a name. With a name comes the ability to fight and the chance to overcome! Remember this above all else, you may have thought about "it", you may even have considered "it", but "it" scared you and "it" didn't win, you did, your family did. Hugs

I am so happy for you that you finally have a name...now you can move forward and you are such a strong person I know you can do it. Knowledge is power they say and now that you know you can conquer. We are all here for you, you are a wonderful, beautiful person. Oh and by the look of joy on Zack's face one cool mom! I am rooting for you!

I'm so happy you finally have found answers, and can now FINALLY start working with treatments that will (*fingers crossed*)help :)I understand completely about that moment on the bridge. I reached a point where one day I was in the kitchen slicing veggies, and I suddenly stopped and just looked at the blade. I swear my wrist ached just at the sight of it, and when I lay the metal against my skin, the ache vanished and it felt *good*. But like you, I fought free of that feeling and continued on living, refusing to give in to that dark temptation to just let it be over. I have far too much to do, and far to many wonderful people to do it all with :) I think that moment is a test to see strong we are... some of us pass it, some of us don't, but it's a test that alters lives forever... those who face the test, as well as the lives of everyone in their lives :) Congrats on passing your test, Lori :) It's so good to still have you with us :)

Lori, you are one of the bravest women I know. I hope to have the chance to give you one of those hugs someday. Until then, know that cyber hugs and much hope for continued wisdom from the doctors are being sent to you!

It always amazes me when you write posts like this one just how MUCH you and I have in common. Not to mention apparently we're going through the same type of 'awakening' right now.

I was where you were not so long ago very nearly taking my life on several occasions.

That's when my boyfriend of 2 1/2 years broke up with me and it made me do a complete 180 and re-evaluate my life. The exact words I told him when we talked later: 'I'm tired of living life on the sidelines and I'm tired of living in fear.'

Yes, we pay for things more so than a 'normal' person would, but there are times where you just have to say to hell with it and deal with the aftermath instead of fearing it!

I truly am happy that you've got a foothold on what's causing everything-That's one valuable step closer to finding out how to manage things :) I have 2 different types of arthritis and was almost diagnosed with Lupus myself, so I completely understand!

Dear SWeet LOri. I have a wonderful friend with RA. She struggles on a daily basis but refuses to give in and surrender to her disease. She fights with dignity and grace. I too, have battled depression and contemplated suicide. My children and grandchildren have been my motivation for not following through. I have 12-steps that save me from the brink of insanity today. I'm truly grateful. THanks for sharing!!

I am so happy to hear that you now have some answers and can properly address the pain you have been dealing with. You are a strong, inspiring woman Lori! There is never ending support of friendship and love from your friends in the beading community should you ever need it. You are not in this alone. :)

My dear husband has had RA since 2000. Medicine is keeping it at bay. It is mostly in his fingers and feet but he still works everyday as a computer programmer. He has his days and he sits while I shop but he is doing well. You are a warrior, Lori! Keep fighting. :)

My dear husband has had RA since 2000. Medicine is keeping it at bay. It is mostly in his fingers and feet but he still works everyday as a computer programmer. He has his days and he sits while I shop but he is doing well. You are a warrior, Lori! Keep fighting. :)

I don't think I could say anything different than what everyone else has said. Will keep you in my prayers that this new diagnosis will be the answer to your problems and the Drs. are able to treat it. You are very brave to share all of this but I'm sure it has helped tremendously.Love and hugs!

So sorry to hear you have been diagnosed with such brutal illnesses-RA and lupus are not kind to a person! But I am sure you are relieved to have something concrete to attack now, and they make effective medications for both illnesses. Fighting is so different when you know your enemy! I am so glad that this has contributed to a better state of mind for you. Sending you heartfelt wishes for battle-readiness!

Lori, my s-i-l went through the exact same spiral of despair before receiving her diagnosis of RA and Lupus. It was a journey, but with an excellent doctor and the right meds, she has her life back. Her garden is the envy of the neighborhood, and she recently bought her second motorcycle (for a month-long trip out west this summer.) Sending prayers and hopeful wishes your way!

I know that this has been a constant struggle for you, Lori, and I am glad that it has a name. For knowing is always better than not knowing and now you can follow a treatment plan. I hope that it will bring you relief and comfort. You have a great attitude about this, that you need to stop wishing and start doing and not let those big words and scary diagnoses limit your future. Good for you for jumping (literally and figuratively). I am rooting for you. This is definitely a 'something good.' Enjoy the day. Erin

I cried when I read your story. I was going to say almost the same words as Pine Ridge Treasures here above, before I have not read a comment. But I still agree. And it's better to know what's going on even it would be very painfull. So you can get some kind of help instead of uncertainity.

I have great respect, that you have done a tremendous job for us beaders in the midst of all the pain. Love and hugs. <3

Thank you for being who you are, because who you are is such a gift to others. Blessings and prayers to you and your family in the coming months as you adjust and move forward. Thank you for inspiring me to appreciate life more than I do.

Oh Lori, I'm so glad you have some answers and a plan to move forward. I know it's a hard road ahead, but I'm so ...proud (that's not exactly the right word, but I can't quite figure out what is) of how positive you are being about this. As always, you are in my thoughts and prayers. Wishing you all the best as you move ahead with your treatments. {HUGS}

Lori, this was a very sad and yet it was so inspiring to wake up this morning. I always read my important email before I get up and I read this one to my husband. We both felt sad and inspired by it. I usually do not take the time to read each comment and this just kept me reading. You have a gift of writing and it is possible your journey to date and your journey in the future will inspire a book that could help so many. Maybe your list will include this. We never know what struggles our friends have and sometimes it seems what we go through is too much. Sometimes answers begin the path to healing. We will keep you in our prayers. God bless.

You have admirable strength, Lori! It's a terrifying realization that it's in our power to end life, but I'm glad that it brought you clarity about what was important for you. Some people don't find that, so I'm especially happy that you did. It helps to have a name for what you're fighting! Peace and Love! Julie

Lori- So sorry to hear you are fighting two difficult diseases, but it sounds like you will surpass them both. Through adversity we find the strength to carry on and something beautiful usually comes of it. My thoughts and prayers are with you! I'll send you some Reiki too. It always helps!!!

Lori, you've struggled with this for such a long time..i'm relieved that at long last there is some name to what's going on..i know you've got great doctors..but also ( if you've not already) check out some anti-inflammatory diets, as well. i've noticed removing corn and wheat, helps my joints...granted it's not the same issue..just my 2 cents worth thrown in.

You will make it my dear! The good news is that now you have a name and know you will have treatment for it.I was also diagnosed with RA at the beginning of the year and felt exactly like you but after having my cancer diagnosis ,a little more than two weeks ago, RA is not going to stop me either.We can do it !!! ♥

Thank you for sharing your story - not an easy thing to do. I've struggled with depression over the years - can only imagine how more challegning it has been for you to deal with such severe physical health problems at the same time. Sometimes, it is about making a choise - to live, be happy, etc. Your positive attitude is inspiring.

Lori, your post nearly brings me to tears and makes me smile and say "YOU GO GIRL" at the same time. As a mother of a 17 yr old girl who struggles with mental illness that is yet to be properly defined or treated I can understand your furstrations with doctors. And as a mother who watches and tries desperately to keep her daughter from the edge of the bridge, I in some way understand that struggle too. Mostly though I understand looking at the worst case, to be prepared for what is coming next, somehow it feels that if you have planned for what's possible it is easier to deal with if it comes, and a celebration if it does not. Hugs, light, and positive thoughts flowing your way each and every day :)

Lori, Thank you for sharing. I am so glad you did not stop on the bridge that day because believe me you are going to be okay and you will eventually feel better than you can even imagine. I also have Lupus and of course I think migraines and depression are all part of it. Maybe it is because like you said you look fine but feel horrible. It is difficult to get sympathy and understanding. My mother-in law told me I was the healthiest looking sick person she has ever seen. You will eventually get on the right medications and you will feel good and maybe some days great.It may take a while and it will be frustrating at times but you will be okay and you will be able to do everything including our beloved beading. Look into getting ALOT of flaxseed into your diet and regular exercise. Swimming is great so is Pilates. I am sure everyone has plenty of advise so for now I should probably just tell you that I am so sorry about your diagnosis but happy your know what it is. See you were not crazy!! Now you can work on getting yourself into remission. Also the good news RA and Lupus are treated with pretty much the same medications you you can kill two birds with one stone. Hang in there and remember you are going to be okay. Hugs and prayers.Linda

Hi Lori, I am glad they found out what it is, I had a feeling when we talked many months ago that you may be heading down this kind of a diagnosis. I have been on Enbrel now for about a year, they may suggest biologics to you as well. let me know if you have any questions about it...so happy you choose to fight and stick around...much love

Lori you are an amazing, inspiring woman. Thank you for sharing your story. I have depression and a couple of different illnesses also, when I am feeling like giving up, I will come back here and read your story. So thank you for writing it!

I'm happy you didn't jump, that you found reasons not to in your life! And it's great you write about it, because it should be OK to talk about suicidal thoughts (as about other mental problems). I'm also happy to hear you got the diagnoses, so you can get some relief from the pain - I've been a bit worried about you during this BSBP round. Good luck with your list, it can only do you good!

Lori, you are extraordinarily brave.. Thanks for sharing your story.. A testimonial that life can be challenging, difficult and exhausting but above all.. It is worth the struggle. Take care of yourself x

an answer!!! i'm so stinking *thrilled* you have an answer! my heart is going into overdrive for you--treatments next!!!

{{{big squishy hug}}}

i've also considered suicide. tried to o.d. on my meds. but wow, i'm so much better know. i'm thrilled beyond words for you. because to have a name for a monster in the dark is to make it knowable, controllable.

my dear aunt corine had lupus. she's no longer with us, but she went into remission several times, for huge chunks of time, in the 25yrs she lived with it. you can do this, sister. *you are strong.*

ra--woo-boy. i know a dear woman who developed ra when she was nine. she has had five kids and is active and healthy. she's just careful about what she eats and sees the doc regularly and takes her meds.you can do this, too.

Lori dear you are such a precious soul and I am thankful you write from your heart and soul. I am so thankful I found your blog as it had gotten lost in my computer. You know I love you and Zack. And your husband is a wonderful man. I think of you each and every day!! Loving Healing Hugs...

Thank you! My husband suffers chronic pain and is disabled but isn't receiving disability payments yet so I am the sole support for my family. After a lifetime of chronic pain and no diagnosis for myself...a few months ago I got my answer...Addison's...no cure and symptoms very similar to lupus. I struggle every day but like you I keep going...for my kids, my husband, all the people who need me to keep going. I so appreciate that you share your struggles...it makes me feel less alone. You are a wonderful person and I am so glad to have found you in our bead community :)

Lori, Thanx for sharing your story with us. I read your post several times thinking about just what to say to you. We all have dark places. I don't think that you should feel shame for your thoughts. Sharing your story will help others. I have been following you for a while now and I can tell that you are a fighter. You have passed through the dark and found light again. Knowing what you are fighting will make it easier. You are so inspirational to so many of us. We will be here to help with anything that we can. I think that your struggle will make Zach a better person. I'm so glad that you jumped on the trampoline. You are showing Zach how to fight back by your example.

Lori, thank you for sharing your struggle and your hope. Your post is wholehearted and touching. Naming your fear is the first step to facing it and I am so happy you have clarity for your journey. You are an inspiration not just to your dear family but to many others struggling who need hope. I'm sending you oceans of healing thoughts!!

God bless you for sharing your vulnerability with us! That in itself is a sign of the strength you may not know you have inside of you! Soldier on Lori!! We support you! You are a continuing source of inspiration and you're right. Your time here on Earth is NOT done!! :)

Lori- I read this post more than once over the last week. I just wasn't sure how to respond, and I did not want to be blithe or placating. This is huge big news. wow. so big. Yes, it is good to know what is going on, but devastating to know, too.I have struggled with degenerative spinal disease, depression and an autoimmune disease (endometriosis), but my struggle is different than yours. I've had 4 big complicated surgeries in the last 5 years.I have asked God why. I have fought with Him over this. I just want it gone- it effects me, my family, my employer. And very few people 'get it'. Even when I try to explain... (My favorite book is still "Disappointment with God" by Philip Yancey- a really good one if you haven't found it.)I am at a place of peace about my pain RIGHT NOW. But a month from now, I'll be angry again. or depressed again.I am grateful for your precious son! The specific gift God uses to bring us back from that brink shows me again and again how well He knows us.I'm praying for you, and thinking of you.Grace & peace to you. And strength for the fight.Much love- Rebecca